What image comes to mind when you hear someone has Parkinson’s Disease? I am sure it is not what you would have seen in Houston at the Women and PD TALK National Forum last week.

In a little over 2 years from concept to fruition, the Parkinson’s Foundation’sWomen and PD TALK initiative held 10 regional Forums in the past year, and a final National Forum in Houston last week. Three years ago, at the Parkinsons Disease Foundation’s (now Parkinsons Foundation) Women & PD Initiative conference that I was privileged to attend, one of the key take-aways was that there are disparities in research and care between women and men with PD. To date, there had not been any studies to look seriously at these disparities and we wanted to know what could be done to improve the care and treatment of women with PD. A year later, Ronnie Todaro, VP at the Foundation who had led the Women & PD Initiative, applied for a PCORI (Patient Centered Outcome Research Institute) grant to help fund Women & PD TALK.

Because the grant required patient involvement, I was honored to be named a co-lead on the project, along with Dr. Allison Willis, Assistant Professor of Neurology, Perelman School of Medicine, University of Pennsylvania. We worked with Megan Feeney, M.P.H.
Manager, Community Engagement at the Parkinson’s Foundation to put everything in place for this initiative.

There were 10 regional forums, with sites chosen to represent large urban areas as well as more rural areas. Each forum leadership team included a Woman with Parkinson’s, a Movement Disorders Specialist or Neurologist and an Allied Health Professional. About 40 participants, both women with PD and Health Professionals attended each of the full day events. Breakout groups at the forums gave valuable information on Risk, Symptoms, Treatment and Care.

50 people, about a third of them women with Parkinson’s Disease, gathered in Houston at the National Forum to go over the findings from the 10 forums and begin to set some goals and create recommendations and action plans. There is too much to report here now, but there will be some specific recommendations to improve the care and treatment of women with Parkinson’s in the final report.

Meeting with such strong women, both people with Parkinson’s and health professionals, makes me proud to be a part of the PD community and inspires and empowers me to do more. Kelly W

What was most interesting to me is that while there are definitely differences in symptoms and reactions to medications, many of the disparities were more cultural and social. Just a few examples:

There are a significant number of women with PD who are caregivers, taking care of children, elderly parents or sick spouses and there is no one to take care of them.

Women tend to go to their doctor’s appointments alone, while men do not. In fact, women go alone to most things related to PD.

Women do not go to support groups as often as men. Some reported that when they went, they were asked who they were taking care of. No one believed that they were the one with PD.

Being treated dismissively by doctors. Told it was all in their heads, and in many cases, especially for younger women, it was because of hormones.

Women need to connect to other women with Parkinson’s. There was a lot of talk about the need for mentors to be paired with the newly diagnosed, to make the disease less frightening and be there for them when needed.

Exercise, Exercise, Exercise!!!! We can’t say it enough.

And finally, can we get rid of that awful caricature of a man hunched over with PD and replace it with the photo above of 11 amazing women with Parkinson’s?

Thank you Ronnie, Megan and Dr. Allison for giving me the opportunity to be an integral part of this team.

A full report will be issued, with specific recommendations and strategies to improve the lives of women with Parkinson’s Disease, sometime in the spring of 2019. I am looking forward to sharing it with you. In the meantime, click here for the link for the press release about Women and PD TALK.

Spread the word

Like this:

This was published several months ago but disappeared into cyberspace. Apparently Parkie hit a wrong key and it went somewhere else.

If you are the average person with Parkinson’s, it probably took you anywhere from 1-3 years to get the right diagnosis. And once you got the diagnosis, your doctor gave you a prescription to fill and a return appointment 3 months later. While you were in a state of shock from receiving the diagnosis, you were in no condition to question this. You went home and crawled into bed, trying to figure out what lies ahead for you.

As a patient advocate, I have met many other People with Parkinson’s (PwP’s) who have had this terrible experience at the time of their diagnosis, myself included. Yes, there is currently no cure for PD, but there are a lot of things that the person with PD can do to live well. The delayed diagnosis and lack of education are probably the biggest obstacles for us at the beginning. We may not be told to exercise. We may think that PD only happens to older men who are shuffling and stooped over. We do not know that there are many things that we can do to improve our situation, with medication, exercise, therapy and more. And we most likely do not know that there are a huge number of people who have been living with PD for years and are living active productive lives

One of my primary goals, and that of other patient advocates who I have spoken to, is to reach out to Primary Care Physicians and Neurologists to encourage them to do the following to ease the shock of the diagnosis:

1: Refer patients to a Movement Disorders Specialist (MDS) if there is one nearby. A movement disorder specialist is a neurologist who has received additional training in Parkinson’s disease (PD) and other movement disorders including dystonia, chorea, tics and tremors. They are more knowledgeable about the latest treatment options, the need for exercise and all things Parkinson’s.

2. If they cannot refer the patients to a MDS, have materials from the Parkinson’s Foundation, Michael J Fox Foundation, Davis Phinney Foundation, local support groups or organizations, and other resources available for the patients. PwP’s need to learn what they can do to help improve their quality of life early in order to cope with their diagnosis. This new, unwanted friend will be with them for the rest of their lives, so the sooner a person can take action, the better off they will be.

3. Schedule a follow-up appointment within a month and encourage the patient to bring someone with them to listen and to ask questions.

4. Connect the newly diagnosed person with Patient Mentor who can talk to him/her on a personal level about living with PD. Several organizations have Patient Ambassadors or Mentors who are comfortable in this role and are happy to help. I have met a number of newly diagnosed Parkies for coffee, and they are always surprised when they see me since I don’t fit the image that they had of someone with PD.

5. Most importantly, the doctor should tell them to start moving. Exercise has been shown to be the best medicine for PD. They should advise the PwP to start slowly if he/she has not been exercising, and increase the duration and intensity over time. A referral to a physical therapist trained to work with PwP’s is always a good first step to living well with PD.

NO ONE should be sent home with only a prescription and a return appointment 3 months later. Given the right information and instructions, the newly diagnosed Parkie will be much more prepared for a future with Parkinson’s.

Like this:

The 5th World Parkinson Congress will take place in Kyoto, Japan on June 4-7, 2019. These meetings are unique and deserve both our attention and support.

It is not just that the meeting brings together doctors, patients, researchers, caregivers, and other allied professionals together for 4 days to talk about all things Parkinson’s. It is also not just that there are a variety of session formats and sizes that will highlight new research, models of care, and collaborations that are changing the lives of those living with Parkinson’s today.

What really sets this meeting apart — and the main reason I am going for the second time — is that People with Parkinson’s (PwP’s) are centerpieces and not just observers. We are welcome to participate in any sessions that interest us. We are encouraged to lead a session, to submit papers, posters, videos and other media and messages. In other words, we are true equal partners and contributors in every sense imaginable. (Full disclosure: I am an official blogger for the conference and in that capacity, will be sharing my experiences there. But having attended the 4th Congress two years ago in Portland and enjoyed and learned from it immensely, I would be going to Kyoto in any event. And it’s a trip to Japan.)

Parkie the Raccoon Official Mascot of the WPC

If it is even remotely possible that you can attend you owe it to yourself to seriously consider it. What can you expect?

The opportunity to meet people from around the world who are making a difference for those of us living with Parkinson’s.

The opportunity to get to know other PwPs from around the world and to make new connections and, quite possibly, meaningful and close friends.

The opportunity to learn the most up-to-date news about all things Parkinson’s.

There is, literally, something for everyone including PwPs and their caregivers/family. (I told Mr. Twitchy not to attend Portland because I worried there would not be anything for him. Big mistake. So I asked him to come this time and he is very much looking forward to going. Did I mention it’s a trip to Japan?)

Registration begins next week on September 10. The website is https://wpc2019.org/ (or you can just click here). If you are interested in volunteering, click here for more information. If finances are an issue, travel grant applications will also be available in December.

One last personal pitch. Before you go, or even if you cannot go, make sure to participate in our “messages of hope.” Three women who became good friends of mine at the 2016 WPC– Naomi, Clara and Amy — were so inspired that they created a global project, Soaring with Hope 4 PD, to promote hope for People with Parkinson’s Disease. Their goal is to collect at least 12,000 messages of hope to be written on origami Cranes that will be part of an art installation at the Congress. Let’s all take the time to contribute to that.

* As an blogger, my “official” duties will be sharing my experiences. But I hope to do more than that. It would be wonderful to meet any of you who will be attending and also to create a photo gallery on the blog of as many of the PwPs I meet there as possible. So please let me know if you plan to go.

Spread the word

Like this:

I decided to let people know I have Parkinson’s to encourage others to take action. I was Diagnosed 3 and a half years ago, but my life is full. I act, I give talks, I do my podcast, which I love. If you get a diagnosis, keep moving!

Watching Alan Alda’s interview on CBS this morning was inspiring and uplifting. Mr. Alda could possibly be the best celebrity spokesperson, after Michael J Fox, for getting the word out that Parkinson’s is not a death sentence. In a 7 minute interview, he covered so much of what my fellow bloggers and I have been writing about, and the most important message he gave is to “keep moving.” I can’t repeat that message often enough, because it has worked so well for me and many other Parkies that I know, for the last 10 years.

Alda insisted that his doctor test him for Parkinson’s after reading an article about how one of the early signs of Parkinson’s is acting out dreams, which he was doing. One of his first symptoms a short time later was a twitch in his thumb. His reaction was not fear. He wanted to help his family understand the disease and stressed that each person with Parkinson’s experiences the disease differently, even from day to day.

He sees PD as a puzzle to be solved. You have to figure out the pieces of the puzzle that work for you to carry on a normal life. It is a challenge that you must meet and you have to find a way to approach it. He enjoys solving puzzles, something that I enjoy as well.

Alda approaches life with enthusiasm and hopefully will inspire others to do as he does: keep on moving. He boxes 3 times a week, plays tennis twice a week, and marches to Sousa music. He says that marching to music is very powerful for PD.

Most importantly, he wants to get the word out that Parkinson’s Disease should not be feared and that there are things you can do to live well with PD.

“… I think because I’m sort of well-known, it might be helpful to people to hear the message that there are things you can do. You can learn about things and not follow quackery, but find out what real science is coming up with. That helps. It helps to keep moving. It helps to move rhythmically,”

I hope that Mr. Alda will consider coming to the World Parkinson’s Congress next June in Kyoto. His message of hope is powerful and it needs to be shared with the Parkinson’s community and with the world.

Parkinson’s can be caused by a) pesticides b) genetic mutations c) traumatic brain injury d) sometimes we just don’t know e) microbes in your gut f) all of the above

Everyone with Parkinsons has visible tremors. a) true b) false

Women account for what percentage of people with Parkinson’s? a) 10% b) 35%. c)50% d)75%

The average age of onset for Parkinsons is a) 40 b) 50 c) 60 d) 70

Research has shown that Exercise is one of the best things you can do to live well with Parkinsons. Which of the following exercises are recommended? A) running b) swimming c) yoga. d) boxing. e) dancing f)cycling g) tai chi h) all of the above I) none of the above

Correct answers: 1 b, 2 a, 3 b, 4 c, 5 a, 6 f, 7 b, 8 b, 9 c, 10 h

How did you do?

0-5 You need to read to the end of this post and then take a look at some of my favorite websites and books about PD

6-8 Almost an expert, a little more studying and you will be a……

9-10 PD Superstar! You can write this for me

The Answers:

MDS stands for Movement Disorders Specialist, a neurologist who has received extra training in Parkinson’s Disease and other movement disorders. If you are currently seeing a neurologist, you may want to consult with a MDS occasionally to make sure you are getting the right information and treatment.

Dyskinesias are involuntary, erratic, writhing movements of the face, arms, legs or trunk. They are often fluid and dance-like, but they may also cause rapid jerking or slow and extended muscle spasms. They are not a symptom of Parkinson’s itself. Rather, they are a complication from some Parkinson’s medications. (Parkinson’s Foundation website)

DaTSCAN™ is a specialized imaging technique that allows doctors to capture detailed pictures of the dopamine neurons in your brain. This technique involves the use of a radiopharmaceutical agent (a chemical compound containing an isotope, or radioactive element). The radiopharmaceutical agent is injected into a vein and taken up by the brain’s dopamine cells. The cells can then be detected through SPECT (single photon emission computed tomography) scanning. In this way it is possible to determine whether there is a reduction in dopamine cells, which usually occurs in the presence of Parkinson’s disease. (Michael J Fox Foundation)

Internal tremors seem to be a well kept secret among People with Parkinson’s.Internal tremors are shaking sensations felt inside the body. They occur without visible movement, which external tremors produce. A person may experience internal tremors in the trunk, arms, legs, or internal organs.

Dystonia is a sustained or repetitive muscle twisting, spasm or cramp that can occur at different times of day and in different stages of Parkinson’s disease (PD). People with PD most commonly complain of a painful dystonia of the foot on their more severely affected side. (Parkinsons Foundation)

Most people have Idiopathic PD, meaning there is no known cause. A small percentage have a genetic mutation (LRRK2, PINK1 or GBA), traumatic brain injury or pesticide exposure as their cause. Finally, the latest research shows there may be a connection between microbes in your gut and PD.

Most people with PD do not have visible tremors at the beginning They may have stiffness, Dystonia or other symptoms that are not readily visible. Some people with visible tremors do NOT have Parkinson’s. They may have Essential Tremor or some other type of tremor.

Men are diagnosed more than women by a margin of about 2:1. However, it often takes women much longer to get a diagnosis, especially if pre-menopausal. (more on that in a future post)

The average age for onset is 60. Although aging increases the odds of having PD, we are not all old. Persons diagnosed under 50 are considered young onset or YOPD. Michael J Fox is a prime example of someone diagnosed at a young age.

Exercise in any way, shape or form is recommended, as long as you do not do something that will cause injury. Start slow if you have been inactive for a long time, either with a physical therapist or personal trainer. The more intense exercise you do, the better, showing longer lasting effects. Walking the dog, briskly, PD Dance classes, PD Boxing classes, yoga classes are just a few suggestions. Find something you like so that you will continue to do it. Just do something everyday. You will feel better, get out of the house, and maybe even find a support group among your peers.

The bottom line is, to live well with Parkinson’s, you need to do some homework. Get out and exercise, meet other people with Parkinson’s who you are comfortable talking to, read about Parkinson’s (but not too much). There are a lot of resources available to you. Most importantly, know that you are not in this alone. There is a large community of people with PD whom you can connect with in support groups, exercise classes or on-line. With their help, you too, can become a PD Superstar!

Spread the word

Like this:

Posts navigation

Follow Me on Wordpress

Disclaimer

Dear Readers: I love to see your comments and get your emails as we share our collective experiences. I am just a lay person and a patient like the rest of you. For medical and similar advice, you need to talk to your own doctors.